Jaw pain with chemo

ellend

In addition to the sensitivity to cold in my hands, feet and mouth, I now experienced pain in my jaw when I tried to open my mouth too wide. Has anyone else had this symptom. I just had my 2nd treatment with Oxypalaitin (sp?) and sent home with a pump with 5FU that gets removed on Weds.

 

Ellen

lizard44

Jaw pain

I didn't have  jaw pain but  I did have spasms- usually  with the first bite of food- it was as though my jaw  tried to lock up when I opened my mouth, but  it went away after that first bite.  I don't remember how long that  lasted- it may have been for the duration of the FOLFOX treatment. I  didn't get the foot neuropathy until after I'd finished the FOLFOX + Avastin- I had eight  treatments.  I still have a   little numbness in my left foot, but  it's not a big problem, more of an aggravation than anything. The nurses did warn me at the first treatment to avoid   eating, drinking or touching anything cold, and I think that helped.  I   kept a pair of gloves next to the  refrigerator and wore them whenever I needed to reach inside- and also when I went grocery shopping. I went the  whole of an Alabama summer  without a  single glass of iced tea or iced water- something I had previously thought impossible!  

I hope your jaw pain  subsides, but be sure and ask your   doctor about it; if it's severe they may need to adjust your dosage.

Grace/lizard44

 

Semira

Husband had this...

... during his chemo with Oxi. It always went away after a few bites and  luckily disappeared after he ended the chemo. But it was quite scary.

Hugs from Germany

Petra

ellend

It's nice to know I am not imagining things

As much as I wouldn't wish these symptoms on anyone, it is somewhat comforting to know I am not the only one. It has gotten so I have to make sure the water is warm when I wash my hands or they sting. No more ice drinks and making sure I use gloves to get stuff out of the refrigerator. I have to wear socks in the house because the cool floors make my feet hurt. Chewing is a little painful right now, that is a new one with this treatment.

If this is the worst it gets, I can handle it. Annoying, but bearable. Last time it went away in a week, hope it does again, so at least I get a week's respite.

Hugs to you all,

Ellen

JanJan63

I remember getting very sharp

I remember getting very sharp pains in my jaw while on it. Right in the joint and like shards of glass. It wetn away after the first bite or gulp but it was always shocking. I hated the neuropathy crap. Touching things that I didn't think would make me react and gasping every time I did. It's like getting a shock after walking across a carpet. I had mine in the winter and that was miserable. The house is warm but things like doorknobs still are just cool enough to cause a reaction. Trying to cut up vegetables with gloves on. Checking to see if the running water was warm enough and then fidning out it isn't the hard way. Ugh. I was actually going to stop my treatments with just a few left to go. Then I got a blood clot and had to stop.

Helen321

Ho Ellen. Yes I had that

Hi Ellen. Yes I had that every time I ate. My jaw would hurt and lock for the first 15 seconds to 2 mins. I can eat just fine now 3.5 years out but at the dentist my jaw still locks. I had to wear gloves and socks at all times during oxi and also if you haven't gotten a port. get a port! Oxi will collapse your veins. The port is amazingly easy and requires nothing but Tylenol for a day or two as far as pain. Really nothing at all. Best choice I ever made. Sped up treatment, blood work and scans too. My friend has horrible arms after oxi, her veins are black 

 

Of special note the supermarket is the worst! I know its summer but wear pants, socks and gloves while there or you skin feels so painful by the later sessions. Also follow all directions for caring for your skin before symptoms start. Moisturizing is very important. 

ellend

I have a port

I have the "power port".  I think the center I go to recommends the port for everyone on the Oxy and FOLFOX treatments. I had minor infection at the incision site, but they put me on antibiotics right away and that seems to have taken care of the issue. If I need to have an MRI or CAT scan with contrast, they can also use the port to inject the contrast.

Now my hair is falling out by the handfuls. It is quite long now, considering getting it cut shorter, so it doesn't make as much a mess. This treatment is not supposed to cause hair loss in general, but I guess I'm one of the unlucky few. I consider this minor compared to the other issues, but it is annoying.

Ellen

Trubrit

Hair today gone tomorrow

My hair fell out and when I started looking like Gollum (Lord of the Rings) I shaved it.   

They never accessed by port during CT or PET. They told me why, but I have forgotten. 

The port was a total blessing. 

Good luck as you go forward. 

TRU

ellend

TRU did your hair come back?

Did your hair come back when you stopped treatment?

Thanks,

Ellen

Trubrit

ellend said:

TRU did your hair come back?

Did your hair come back when you stopped treatment?

Thanks,

Ellen

Oh yes!

it came in curly and quite wild. Now, three years later, it is probably straighter than before chemo, much to my chagrin. It is definitely just as thick though. 

Tru

 

abrub

Trubrit said:

Hair today gone tomorrow

My hair fell out and when I started looking like Gollum (Lord of the Rings) I shaved it.   

They never accessed by port during CT or PET. They told me why, but I have forgotten. 

The port was a total blessing. 

Good luck as you go forward. 

TRU

They couldn't use my port for CTs either

I had a small port put in, which was fine for chemo, but not adequate for the CT infusions, so I had to get IVs for those.  I was given the option of a small or large port (no power ports in common usage then) and was steered to the smaller one because of my size.  No regrets, but it was a nuisance when I had scans.

Alice

abrub

Yes to jaw pain, cold sensitivity, etc.

I couldn't use metal flatware, it was too painful.  We got the heavy duty plastic forks and knives for me, or I used wooden chopsticks.  Gloves for the fridge; scarf over face (winter chemo); husband had to warm up car before I got in.

First bite pain  - like lightening bolts - made me fearful of eating, even tho it stopped after the first or second bite.  All standard stuff for Folfox.

Alice

beaumontdave

Didn't have jaw pain, but I

Didn't have jaw pain, but I don't recall trying to open my mouth "too wide". Just teasing, but I read that some use a cold cap to chill their scalp, and by doing so, suffer less hair loss. I lost some hair, but it was evenly distributed. Had it been clumpy, I would have gone Walter White with it, I already had the hat, and the kids called me Heisenberg when I wore it anyway.......................Dave

funshine

ellend said:

TRU did your hair come back?

Did your hair come back when you stopped treatment?

Thanks,

Ellen

hair loss

mine fell out also. it will grow back, most likely totally different than it was before. I have four different types of chemos and each one my hair fell out, some more than others. It always grew back and a different texture each time.

Kazenmax

Jaw pain

Ellen,

I'm in the midst of my post op chemo. I get an oxaliplatin infusion every 21 days and take oral Xeloda for 14 days with 1 week off. My initial infusion was delayed because my white cell count was down. So my husband got me mega doses of b--12 which I took for 5 days prior to my next infusion.  It worked at bringing up my white cell count but it caused horrific side effects from the oxaliplatin.  I had jaw pain for the first 5 days following the infusion along with bad hand neuropathy and muscle cramping. My fingers would stiffen into the Vulcan salute which was extremely painful.

The second infusion went much better without the b-12. 

I'm due for my 3rd in 2 weeks. My hair is thinning considerably and I expect after the next infusion, I will shave it. I wear it short but am finding hair everywhere! 

The coldness problem is so bad that although it's hot outside, I have to microwave my water for 15 seconds before I can drink it.

For the first week after the infusion, my hands shake a lot. I'm tired... no energy, and my blood pressure is very low 90/58. If I stand too quickly, I grey out. Towards the end of the 21 days, I almost feel like myself again... just in time to start it all over again. This has truly been the suckiest  experience I've ever had.

I was diagnosed as stage 3 T0. No lymph involvement. I had the APR surgery.  Anus, sphincter, setup and a bit of colon removed. I have a permanent colostomy which I'm still getting used to. The surgeon said I was cancer free post surgery but recommended this chemo to get any "micro" canceR cells that might be left. 

I've decided it side effects get worse, I may stop the chemo. I'm not a baby but this is very rough. I hope you are doing well now. I am with you in spirit and hopefully we will look back years from now and see that we really were strong enough to get through it.

Good luck

K

funshine

jaw pain

I did get the severe jaw pain and had a tooth pulled and another one partial root canal from the xeloda. The pain started the very same day I started Xeloda, took it for only 7 days.  I took oxy to take the pain away and it bearly touched the pain. I quit taking it and within a day the pain started to go away. It was too late for the teeth though. It was all from the xeloda because I didnt have a problem with my teeth or jaw before it. The doctor said xeloda only worked in 10percent of the patients anyway.

 

ReginaS71

Jaw Pain with Treatment

I have noticed when I have my treatments (currently getting #7 of 12) that it feels like fluid in my left ear which also leads to teeth/jaw pain.  My doctor gave me ultram for bag/leg pain, and if this pain is bad I will take the ultram for the eaqr/jaw/teeth.  I will get my pump off Wednesday as well...

ReginaS71

Kazenmax said:

Jaw pain

Ellen,

I'm in the midst of my post op chemo. I get an oxaliplatin infusion every 21 days and take oral Xeloda for 14 days with 1 week off. My initial infusion was delayed because my white cell count was down. So my husband got me mega doses of b--12 which I took for 5 days prior to my next infusion.  It worked at bringing up my white cell count but it caused horrific side effects from the oxaliplatin.  I had jaw pain for the first 5 days following the infusion along with bad hand neuropathy and muscle cramping. My fingers would stiffen into the Vulcan salute which was extremely painful.

The second infusion went much better without the b-12. 

I'm due for my 3rd in 2 weeks. My hair is thinning considerably and I expect after the next infusion, I will shave it. I wear it short but am finding hair everywhere! 

The coldness problem is so bad that although it's hot outside, I have to microwave my water for 15 seconds before I can drink it.

For the first week after the infusion, my hands shake a lot. I'm tired... no energy, and my blood pressure is very low 90/58. If I stand too quickly, I grey out. Towards the end of the 21 days, I almost feel like myself again... just in time to start it all over again. This has truly been the suckiest  experience I've ever had.

I was diagnosed as stage 3 T0. No lymph involvement. I had the APR surgery.  Anus, sphincter, setup and a bit of colon removed. I have a permanent colostomy which I'm still getting used to. The surgeon said I was cancer free post surgery but recommended this chemo to get any "micro" canceR cells that might be left. 

I've decided it side effects get worse, I may stop the chemo. I'm not a baby but this is very rough. I hope you are doing well now. I am with you in spirit and hopefully we will look back years from now and see that we really were strong enough to get through it.

Good luck

K

Colostomy - Stage 3 Colon Cancer

I can relate to so much of what you stated. I was diagnosed with stage 3 colon cancer with 3 lymphnodes involved.  I had 10" of  my colon removed and have a colostomy which will be reversed when I complete chemo.  The colostomy has been more bothersome for me than receiving a cancer diagnosis.  I am so annoyed with insurance in trying to obtain supplies and even meds for the chemo.  If insurance wasn't so bothersome, I would have much less anxiety.  The effects of the cold have decreased my outings... it's hard to attend church, get groceries, or even eat out because I can't control someone else's room temperature.  Reusable bags should not be forced upon us by insurance companies because they are just unsanitary in general, but with us on chemo, it's more of a biohazard; but the insurance company doesn't care about that.  I am thankful to have insurance and I remind myself of that on the days I want to go postal on them. 

The side effects are rough.  I have always been very independent and now find I must rely on others.  I view this as a learning experience...I am learning to receive.  It can be overwhelming, but is a valuable lesson in it.  I am also learning to listen to my body, rest when it needs rest, etc.  I chose not to do any pills for treatment because I won't take them, so I get the pump and wear it for about 40 hours.  My treatments are every 2 weeks, but even on the off week I drive an hour to the oncologist for blood work.  I am on my 7th treatment right now (7 of 12).  I am experiencing the thinning of hair.  I say "thinning" as this is what my doctor said it would do.  Her definition of thinning and mine are apparently different. I am finding much more hair than I thought I would.  This has increased my anxiety level times 10, and I am being treated for the anxiety.  At this point, I am not cutting my hair.  I am praying about it and declaring Scripture over it.  I have a global radio broadcast via satellite radio on www.honecominggospel.com on Sunday's at 8pm EST.  I have not been able to send in updated broadcasts because of the fatigue.  This too shall pass.  You, K, are a warrior.  You will survive this and share your experience to help others.  Revelation 12:11 says that we overcame the adversary because of the blood of the lamb and because of the word of our testimony.  This is a test which provides you a powerful testimony.  You are in my prayers. 

 

ellend

fifth of eight treatment

i am no longer getting the full FOLFOX infusion. I am only getting the Oxipilatin infusion with the 5-FU pump for 3 days once every 2 weeks. The oncologist took me off the Leucovorin and 5-FU infusion after the 2nd treatment due to low platelet count, which is still very low at 65,000. I started taking a spirulina supplement to see if that will help.

The Oxi is bad enough. The jaw pain on chewing is getting worse, but I have to chew well or risk a blockage with the iliostomy, which I definitely want to avoid! The sensitivity to cold is also no fun. I need to buy some better gloves to get things out of the refrigerator. I think the rash on my legs might be due to the chemo and not bug bites like I first thought. Itches like crazy.
I also think I am getting mild to moderate headaches from the infusion. If this is the worst it gets, I should be able to finish all 8 treatments.

This disease sucks.

Thanks for listening,

Ellen